The 411 on me... not much too new, but a new wrinkle or two.
 

OK, here's the 411-

1. Mets to my pituitary area: I finished 25 days of low dose targeted IMRT rads to my infindibulum (pituitary gland/sella turcica) last Weds. Oct. 14. All went extremely well, no complications, no side effects other than fatigue and a little blurry vision, from suspected mild swelling in the area of the optic chiasm, which will self correct.

Without a biopsy, we can't determine 100% that these two tiny spots were mets, they could have been benign pituitary adenoma. I spoke to both my onc and rads onc, a neurosurgeon and my new Endocrinologist, who all agreed that this is NOT an area that anyone should be biopsying... that said, upon looking at the MRI, the Endo said that the spots did not look consistent with adenoma, so we are assuming mets.

These mets were outside of the BBB (as my onc calls it, the Better Business Bureau, ha). So, they were inside the internal boney structure of the skull. They are now effectively zapped, bye bye.

Side effects of having a tumor near/touching the very sensitive pituitary gland can be numerous, and I think I lucked out. It turns out I do have a Human Growth Hormone deficiency from the pituitary getting it's feelings hurt... but we won't be supplementing me with HGH shots (because I am a mets patient with the chance of active cancer lurking beneath the levels of detection. HGH supplementation can fuel cancer growth, and if I did do the HGH shots I would no longer be eligible to ride in the Tour de France, play Major League Baseball, or compete in the Olympics, which would be a bummer). The Endo tells me that supplementing it isn't imperative, but in a healthy person would be recommended, as there are a few complications it can cause. In my case she says the risks mitigate those complications and I do not present with those complications anyway, other than the midsection thickness/spare tire, that could also just be 50 yr old menopausal woman.

The other side effect of an insulted pituitary is that I might have 'diabetes insipidus' which is also called water diabetes, and it just means that you have excessive thirst and excessive urination, and urine is not concentrating properly. I will have results from a final urine collection next week. If I have it, it is a fairly easy fix with a once a day nasal spray of vasopressin. I am actually starting to think that I won't end up positive for this, as since radiating the pituitary tumor, my thirst has started to decrease, so maybe we reversed this side effect and made the pituitary happy... but I will know more next week.

2. My tumor markers have increased slowly and slightly over the summer. This could be a combination of two events. One could be shedding of cancer cells from the radiation. The other could (and probably is) from the increase in size and activity of the spot we have been watching on my right illiac crest (rear pelvic bone). It is still small, but showing slight progression.

We have decided it is time to radiate that sucker, too and just get rid of it. I will meet with the rads onc tomorrow to set a plan. We had cogitated about changing systemic pharmaceutical treatment as well (went over several thoughts, options, trials), but since there is nothing else showing up on PET, my onc wants to 'not upset the apple cart' just now and pile on new side effects when we don't see anything else new showing up. It seems that for the most part, the Herceptin/Tykerb is still holding me pretty well. We will PET (and MRI appropriate spots) every three months to stay on top of everything and monitor TMs closely, and the minute that something brand new appears we will talk about changing up the systemic treatment. This week we talked about treatments I have not had yet including Abraxane, Gemzar, Navalbine, Avastin (and Ixempra, but neither one of us is a fan of that one just now)... and he also mentioned the Heat Shock Protein trial that I would qualify for which he finds very interesting, (and we are still cogitating about seriously), the TDM-1 trial if there is one open within a reasonable vicinity, and then watching pertuzimab, nertatinib, and pazopanib results. Seems there are lots of things still in the pipeline, hopefully, if and when needed.

3. The one systemic change we made was adding Aromasin back into my treatment. We dropped it a few years ago thinking that it wasn't gaining us anything, but with new info he thinks that it might be another tool that can't do any harm and might buy us some results... I tolerated it really well before, so I am excited to welcome it back. Whatever it takes to keep this stuff at bay I am open for and the smaller the measures needed, the better in my book.

4. So, for now, I am keeping steady with Herceptin/Tykerb/adding Aromasin and doing my 3 month Zometa, and irradiating the bone spot on the illiac crest. Maybe adding vasopressin nasal mist if I present with 'water diabetes' after urine collection test is done next week.

Whew. My fingers are tired. I think I might be qualified (as we all might) to get a job as a doctor's dictation transcriber... ya think?

Re: The 411 on me... not much too new, but a new wrinkle or two.
 

So glad your olympic and tour careers are intact!!! Fact is, I really can visualize you whizzing by on that bike with an intense look meaning..."I'm in it to win it"!!!
I'm glad for the good news that your current drugs seems to be doing the job they were hired to do! And it seems a good thing to zap that hip too and get it gone!
You are a walking/talking BC encyclopedia, but I wish you didn't know one word of it!
Hey, about this spare tire middle. Mine popped up this year and is most distressing! Makes the old clothes look totally goofy and me feel like an ol' gal finally! there just has to be a remedy that works besides 1 1/2 hours each day at the gym.
Brenda, you are so incredible. Thanks for the update and know you're always in my prayers and thoughts.
Hey, are you going to San Antonio in December this year? ma

Re: The 411 on me... not much too new, but a new wrinkle or two.
 

Brenda - Thanks for the update. I always learn from your posts - so articulate and descriptive. I wish I had your writing gift. Happy to hear you are doing well and hope the herceptin/tykerb etc. keeps everything in check. Pam

Re: The 411 on me... not much too new, but a new wrinkle or two.
 

Hi Brenda
reading your post is like a breathe of fresh air. On down days your tenacity and determination always spurs me on.
As already said I always learn things from your posts!
Thanks for keeping us informed
Ellie

Re: The 411 on me... not much too new, but a new wrinkle or two.
 

I am keeping my fingers crossed, too.

Karen

Re: The 411 on me... not much too new, but a new wrinkle or two.
 

After going to the AACR advances in breast cancer research meeting in San Diego a week ago I was terribly impressed by Dr. Christoph Klein's work on metastasis.

He is among many who feel bone marrow information can be EXTREMELY important to guide treatment.

Since you have tumor cells in your iliac crest which are big enough to see on scan/xray, wouldn't it make sense to biopsy/aspirate these and discovery their phenotype (pattern of markers) to be certain your next treatments are the very best they can be and most likely to take care of your problem since you won't be biopsying your pituitary. Not everyone has the capabilities to phenotype DTCs, but since your tumor is visible on scans/XR perhaps discussing a small bone biopsy would be reasonable.

I hear over and over again at the conferences that breast cancer patients die of their metastases, not their primary tumor and if you direct the treatment against the pathways active/markers on their primary tumors you may be three/four/five steps/mutations/clones behind where you need to be to attack what is driving the met.

Circulating tumor cells are heterogeneous--Dr. Stephanie Jeffrey of Stanford has even shown triple negative CTCs circulating in her2+ metastatic breast cancer patients on herceptin, but according to the literature and talks at conferences I have attended DTCs seem to represent more patients' prognoses(see works of Klaus Pantel) and which pathways need to be blocked to save them.

Once you irradiate the pelvis it won't be possible to know what your DTCs
(disseminated tumor cells--ie tumor cells in your bone marrow) were like
they might be ER+ when the primary was ER- or vice versa

A true bone biopsy vs a bone marrow aspiration might tell even more as they could possibly freeze it and do a microarray--they are finding out how to predict based on microarrays which treatments will be effective. Again, the microarray for the met may be different from the microarray for the primary tumor and it is not the primary tumor that threatens lives.

I have written the above based on my readings and attendance at conferences--I have no expertise but I hear these themes over and over again at conferences...if only we had been able to biopsy the metastasis to direct treatment!

Re: The 411 on me... not much too new, but a new wrinkle or two.
 

Hi Brenda,

Thank you so much for the update. You are a trail blazer and I learn from you each time you post. Please keep us posted and I hope that you have the best possible outcome.

Love, Hope, Peace, Carolyn

Re: The 411 on me... not much too new, but a new wrinkle or two.
 

Wow Brenda, you go girl, what a team you and your
Drs. are. Thinking of you and wishing the best.
patb

Re: The 411 on me... not much too new, but a new wrinkle or two.
 

Thanks Lani - I was actually going to ask that question myself today when seeing the Rads onc. I like to rule out all other additional info avenues before we zap things into oblivion.

Re: The 411 on me... not much too new, but a new wrinkle or two.
 

Wow Brenda,

I just have to say once more...you are so impressive, you are my hero in how you have assembled not so much a team as a full orchestra to fight this crap.
Carefully yet persistently orchestrating your survival and the canser's demise.

Brava!

Re: The 411 on me... not much too new, but a new wrinkle or two.
 

That was worth the lengthy read if only to come across "diabetes insipidus" ;)

Regarding Lani's input, I have to say the bone/bone marrow to mets link issue seems to be a repeating issue in cancer stem cell viewpoint. If it doesn't interfere with your overall plan, you might consider moving your Zometa to around 24 hrs after whatever other infusion you get. There is suggestion following chemo with Zometa can synergize the two. Me thinks (armchair onc) by drawing the chemo to the bone tissue/marrow where met signals may be formulated. Have you considered Cellsearch or serum her2 test?
Oh..another highlight: "infindibulum" Just damn fun to say.

Re: The 411 on me... not much too new, but a new wrinkle or two.
 

You never cease to amaze me. Grace under pressure, for sure. I think your plan sounds good. Ditto for Lani's input.

I think Avastin is effective and easily tolerated, if it's allowed. And I thought that Zometa prevents further bone mets as well as heals existing mets.

Re: The 411 on me... not much too new, but a new wrinkle or two.
 

Wow, you've traveled a long road. You are defintitely an inspiration, and it's good to hear promising news.
With hugs and love,
Diane

Re: The 411 on me... not much too new, but a new wrinkle or two.
 

Forget being the "doctor's dictation transcriber". You could be the DOCTOR!!!

ETA: great photo, Flori

Re: The 411 on me... not much too new, but a new wrinkle or two.
 

OK, more answers:

1. From the onc regarding Lani's suggestion of biopsy of the illiac crest bone spot: (he never dismisses my questions, he is always happy to answer them thoughtfully and respecfully... he thought it was a great question)
" it doesn’t make perfect sense for the following reason: if you biopsy the illiac lesion and find out certain characterstics about it, you still don’t know if every metastasis in your body has those same characteristics. So, logically it doesn’t make sense that you could guide treatment based on the characteristics of one particular metastatic lesion, any more than you can guide treatment based on the primary lesion.
Also, using microarrays to plan treatment is still way too early for prime-time. Howard Oser, in fact, made the point at the meeting I attended a few weeks ago, that there is currently not good data to support using a commercially-available microarray such as Oncotype to guide treatment. In other words, at this point there is data to use it to make a prognostic decision, but using it to predict how somone will then do with a particular therapy is only an extrapolation that may or may not hold up. 'Feeling' like something may be important, and real data that shows that it is important and proves that it actually can guide treatment are two different things at this point in time."

2. Rich, I forgot to mention that I have been on Zometa for over a year now. I am getting it every three months... I have gone back and added that detail to my original post.

Re: The 411 on me... not much too new, but a new wrinkle or two.
 

Even to my scrambled brain, this made sense. I'm trying to keep up with CTC and DTC research (not quite sure why) thinking it might one day be really helpful. ma


http://jco.ascopubs.org/cgi/content/full/23/8/1623

Re: The 411 on me... not much too new, but a new wrinkle or two.
 

Brenda, Best, Best , best of luck to you---you are a rock! Ceesun Do people who do not have bone mets take zometa??? If yes, is it a proven preventative?

Re: The 411 on me... not much too new, but a new wrinkle or two.
 

Brenda,

This is great news given the location of the brain met.

I understand your onc's position about basing treatment on a particular met, as my brain met was HER2-. My onc said there's a 10%-15% chance of discordance between a primary and a met.

Do you think it would be worthwhile to put a biopsy in storage for future reference? There are so many twists and turns in bc research, it might come in handy in the future for a reason that eludes us today. I've contacted Stanford U for the NaI symporter test and will be sending them a sample soon.

Joan

Re: The 411 on me... not much too new, but a new wrinkle or two.
 

Brenda,

You are truly amazing! To write so well and provide such ample information while under the enormous pressure you are enduring, not to mention the aches and pains.

I can only say 'thank you' and God bless you in all your endeavor.

I am not allowed to drive any more. But if you need a hand, let us know as I can probably send hubby down I-35 in less than two hours.

Take care now and know that you are in our prayers.

Re: The 411 on me... not much too new, but a new wrinkle or two.
 

Brenda,

You are a fountain of knowledge, inspiration, and wisdom.

Please know that if you ever need to be in Dallas you are welcome to stay with us.

Best,

Terri